I am...

Very tired...

Losing battles at every turn...

In increasing Pain...

Losing the desire to fight anymore...


My head hurts.


Something needs change.

6:00 p.m. Back from UCSF...

Its 6:00 oclock...

We made it home from UCSF...
Mariah and I saw each of our respective neurologists...
I can't tell tell you how special that is.. we each are seeing freekin' brain doctors for active probs...

Also, when I blog, or email... I try and proof read what I have written before I click "send", to clean up typos etc...
In the previous sentence, there is an extra "tell"... THAT isnt a typo.. itsa gdamn glitch in the processes in my brain that are breaking down. Just thought I would leave it that one so y'all get an idea of whats happening in my head. (stuttering?) shit.

Anyway....
Not much good news for either Mariah or me...
My doc decided to go ahead and schedule a new MRI soon..next few weeks instead of September due to continuing symptoms...


Mariah has to go back for another MRI in six months for a new anomoly behind her left eye that is of concern.. neuro-oncologist is supposed to contact us next week for more...

Her EEG came out fine ... Some normal "abnormal" spikes appeared in the test.
This means that the "spikes" aren't normal, but not necessarily abnormal for an NF-1 carrier.


I'm tired.
I can't remember anything else.

I am gonna rest for a bit and watch Stargate SG-1.

I'ma Sci-Fi dork.. I know.

My Lovely Lady French Nuerologist just called...

She reviewed my new MRI and is happy with the results...happy with the reduction and is setting a new MRI and office visit for September...(3 month)

We disussed the double vision/blurred vision symptoms and left side pain issues.
Some of the pain meds have vision related side affects, so she recommended follow-up with PCP and pain doc.

Seems I will be wading through symptoms and docs to resolve them one at a time...
I gotta do something to improve the quality of life factor... soon.


I need to go think about stuff...

Mariah EEG and MRI...

The trip to UCSF for Mariah went well Tuesday.

If you read this blog you know that my brain stem tumor is caused by NF-1.

Mariah my youngest daughter is also a carrier.

This means we have to take her to get brain mri’s every year or two.. to be sure there aren’t any developments like the one in my head now…

This year we happen to be getting a sleep-deprived EEG as well for another issue, but its cool.. and it gives us a great point of reference when treating or dealing with the nf-1 in the future

Here she is getting a buncha electrodes connected to her head for an sleep deprived EEG…
Afterwards, we will head around the corner for the MRI…

OWE! Pulling hair!!

I'm so pretty ~!~!

Follow-up with her neurologist is Monday...

I will post with results then...

still and again...

So... My “weeping edema”, “pitting edema” probs are back


So much so that the swelling is to the point the skin on my legs is shiny…glassy even.
Stretched to the point of feeling like it will tear at any moment….
Heat builds in my legs from the stretching of tissues. It hurts.

Weeping leg edema means a back up of pressure within the small veins and capillaries that drain a specific region of the body. It was first described when there was obstruction to the venous and capillary blood vessels draining the lower extremeties. When the pressure gets high enough, the thin walls of the small veins and capillaries become leaky allowing the water portion of the blood to leak out. This fluid fills all the spaces outside the blood vessels and eventually ‘weeps` out on to the skin.

It also leads to the build up of water on my ticker…left side heart enlargement…
The weeping also leaves concerns that there are solids left behind when the water portion of the blood is forced out…solids that can turn into clots.. in my legs or heart or lungs..
THAT could be dangerous.
I’m a mess.


Yes, I am taking my damn water pills.

just a note...

I been hurtin'for days and breathing is becoming more labored as time passes.

Fuck.

Doc appt in the morning.

finally...

OK here’s the deal…

Some days I wake early….(4:00 a.m.early - ick)
Some days I sleep until lunch time or later.

But almost always.. Either way my first thots are of how of to avoid or control the pain that is sure to plaque my entire day…
Getting my fix. Planning my day..
Will I be able to control my pain or double vision enough to drive?

Bathing, will likely take an hour or two…

If the day is good one, I will be able to continue with a “normal” day.

You all know what that is…where one proceeds with work or errands…taking a kid to school, shopping for groceries or paying bills.
If the day isn’t so good, I might need to rest until lunch or so…sometimes a shower is simply exhausting.

With very careful drug management I seem to be able to create a few hours each day that are OK…other than that, I am miserable.
My stoopid brain tumor is stealing from me not only years from the end of what was my expected lifespan, but hours of everyday along the way.

Managing, manipulating, and planning…each day around a walnut sized tumor embedded in my brainstem.

All the long term goals and plans that I ever had are trashed…
I had become complacent anyway…all the cliché “quality time” that I should have been spending with my kids and family… had all drifted to the wayside…assuming there would always be time. I had become too comfortable being bitter and cynical about who to blame for everything wrong in my life. The fact is, I was to blame for enough of it that I really shouldn't have been looking around pointing fingers at anyone. It was a waste of time anyway, wouldn’t change anything.

Now my perception of time and space are different. There is a psychosis that occurs when a person deals with pain for an extended period of time. Your goal for the day, everyday, becomes getting past this pain…
I am learning terms like “baseline pain” and “breakthrough pain”…”incident pain”.
Before, I just thought pain was pain.

I am learning that some of the chemo drugs have a tendency to lead to leukemia. I found today that one of the primary drugs I am taking for pain may be causing my vision problems. The freekin’ steroid that has caused all my weight gain jacks with my blood sugar and blood pressure. What fun huh?

After a week of having my blood pressure down around 80/50… It’s now been 150/100 all damn day today and yesterday. I feel like shit.

With that, I am off…

I have tried to finish this damn writing for about two weeks, and after a few reviews, fixing damn typos more than once…I am finally going to just post it and hope I didn’t miss anything to horrendous. I think it tells what I wanted to say…

Bleh..

For the moment, I am feeling better.
Hopefully a reprieve from the last several days that have been plagued with fatigue and misery.
I have slept virtually non-stop since early in the week and have found moving or eating...anything...both difficult and painful.

I missed the aerial fireworks show last night and am really bummed about that.

My kids are home from Summer break tho, and that's cool.. I am glad to have them back here, although I wish they left their sibling bickering on the damn train that brought them. ;)

It is Saturday. the sun is up..I can move...I can see...(only one image to choose from).
Today is starting off good. Today will be comparatively productive if it stays this way.

Sweet~!

After an entire day of being pissed off at the world...
My stellar daughters came home from summer from their moms.. with my b'day /fathers day gift of this !!
Totally took away my pissies (despite the excruciating pain developing in my head and back...)

8.0 Megapixels for stunning prints as large as 16 x 20 inches.
3x Optical Zoom-NIKKOR Glass Lens gets you close to the action.

Anti-Shake Mode minimizes the effect of camera shake.
Huge, Bright High Resolution 3.0-inch LCD makes it easy to view and share pictures.

Adjusts up to ISO 1600 to keep shooting even in lower light.
Nikon In-Camera Innovations:In-Camera Red-Eye Fix(TM)--automatically fixes most instances of red-eye in the camera.

You may never see red-eye again!Face-Priority AF--Nikon's face-finding technology that automatically focuses on faces.D-Lighting--rescues dark or backlit images by improving brightness and detail where needed.
Color Navy Blue

The pic is RED but my camera is BLUE..

My very first digital camera~!!! WOOHOO!

Now all I have to do is learn how to make it do everything it can do...

stills, movies with sound, a freekin 3 inch screen...awesome...

In other news, my wonderful optical logitech trackman wheel mouse that so adore and have so for years fell ill several days ago...we made use of a simple two button shitbird mechanical mouse for many days as i futzed with the trackman. I did get it up and running...I was so happy!

Today it died all together..and there aint no coming back this time. Thursday I will need to go buy another one. Does anyone else hear bagpipes?